Liver transplant - Let's support each other

What calmed my fears was after my first evaluation at Mayo being informed, I was not sick enough that time to be listed. That now I was part of the Mayo transplant program scheduled six months later for re-evaluation. That gave me hope again.

Hi
Hope you are keeping up your hopes very high, which is a must in a situation such as yours.
When the MELD score is in the range of 34, one is already in the system to get a liver. It could happen anytime and depends on the matching profile of the donor or the source of the liver.
Also, it depends on the Hospital too. In my case the doctors were really keen in finding a liver and during my hospital stay, there were almost 20 patients were with me pre or post surgery. I had mine at The University of Virginia Hospital in Charlottsville VA. Just believe in your self. You will be just fine. I sincerely hope all will work out well. take care

Hello - If anybody can help me that would be great. I am fortunate enough to have a relative open to potentially being a liver donor. I have been referred to Mayo Phoenix and will hopefully be able to get a consultation in a month or two. Does anyone know what the height differential is for a donor? - for example: do you have to be within 8 inches of each other? And, how soon is too soon? My MELD is around 12. Our blood types are compatible.

Thanks for any help.

Hello

Congratulations

I am a post live donor liver transplant recipient.
Most of the evaluations are done by the hospital transplant team. There are certain criteria they look for but height may not be one of them.
There are many requirements for liver transplant surgery. Before you can begin the liver transplant evaluation process, you must be free of:
• Cancer outside the liver
• Alcohol for at least 6 months
• Substance abuse
• Active infections
• Disabling psychiatric conditions
• Documented medical non-compliance
• Lack of adequate social support
• Lack of adequate insurance
• Other diseases or conditions
You must also be willing and able to make lifestyle changes to support the gift of life that a liver transplant provides
Also, I find that your MELD score is not high enough to get to the waiting list, however, it depends on the evaluation of the Transplant surgeon and the team for both parties.
There are several processes the hospital employs to get to you the transplant stage.
Please note assuming you reach the transplant date it is almost an 11 hour surgery and about 6 hours for the Donor.
Best option, please consult the hospital for further advice.
You will be fine, just take one day at time.

New to Mayo Connect, My therapist thought it would be great to talk others who have been in my situation. I've had two liver transplant, the first i had at 17 years old and im approaching my 3 years anniversary of the second transplant. I had a kidney transplant the same time of the second surgery( during Covid). I couldn't remember what recovery was like after my first surgery but this second time around was an experience. The weight gain form being home for 6months was not fun, im still strugging to maintain a size im comfortable with but with prednisone nothing is certain.
Lets talks i'd be happy to share my stories with anyone who are awaiting surgery or post.

@klm3, How soon is too soon? That is a great question and I hope that you will learn the answer to that when you have your evaluation. Each of us is unique and our liver condition as well as related health issues.

I have a deceased donor. I have never heard mention of donor height being a consideration in the match. I urge you to read the information that @jamesduaiswamy has shared.

Here are some links that you will find helpful as you wait for your scheduled appointment:
- Living-donor transplantation
https://www.mayoclinic.org/departments-centers/living-donor-transplantation/overview/
- Transplant Blog - with Living Donor Toolkit
https://connect.mayoclinic.org/blog/transplant/
@klm3, Do you have any questions as you proceed toward evaluation? How can we help you prepare?

Hi, @jinja320! Welcome to Connect. I am happy to meet you and excited to be the first one to say "Hello" to another liver and kidney recipient!

I am a liver and kidney transplant recipient. I got both organs in a simultaneous transplant surgery in 2009 from an anonymous deceased donor. I had Primary Sclerosing Cholangitis (PSC) and I was 60. I read that you were 17 for your 1st transplant. I must say that you are an inspiration to me - because you are willing to share your story which gives hope to others who are undergoing their own transplant journey.

@jinja320, As a member on Connect, you are able to join into any discussion, anytime with a comment or a question, or an emotion (Like, Helpful, Hug) You mentioned a 3 year anniversary coming soon. Here is a group that I thought to share with you.
- Happy "Transplantiversary"!
https://connect.mayoclinic.org/discussion/happy-transplantiversary/
Did you have a living or deceased donor(s)?
Are you comfortable to share a little about the reason for the 2nd transplant?

@rosemarya Thank you for your advice. And I've read @jamesduaiswamy post as well. I did call the local Phoenix Mayo and was told that I would have to go through the process of being put on the transplant list and then we could go through the living liver process. It was a transplant nurse I spoke with.

Right now, I guess I'm healthy enough to not be on the list and I got good news today that my MELD dropped down to 11 (at one point in September it was at 20). All of my conditions are cirrhosis related but nothing that would put me in consideration for the list. I have a Hematologist who is going to run a test for Leukemia but I really don't have any symptoms of that that can't be attributed to my liver health. I was just hoping to get some of the evaluations out of the way and not do the transplant until a few years later, as oppose to what I must do now - wait. I understand donating part of your liver can be difficult and many probably don't know that they can donate while alive but I'm surprised by how little living liver donations occur.

I don't have any questions about evaluation prep but thank you. My questions are mainly to work out how and where the out of town donor would get tested. And, I was told that they would go over cost and insurance at the time of an appointment.

@klm3, Good Morning. I commend you for your self advocacy and for seeking answers about your current health concerns. There are other things besides liver disease that can affect the liver. Right now, is sounds as if your doctors are looking for a diagnosis for your elevated lab results.

Living organ donations are becoming more and more common that they were when I was waiting for one. For example, my original transplant center in KY did not perform living liver transplants until a few years ago.

I transplanted at Mayo Rochester. I can assure you that the patient/caregiver education at Mayo is fantastic. I hope that your upcoming testing will go well for you. In the mean time, in the words of my GI - do healthy things like: remain active, develop healthy eating habits, avoid alcohol and over-the -counter meds/vitamins/supplements w/o doctor advice, keep all doctor appointments and lab schedules.

Will you be traveling to Mayo AZ?

@klm3 - Welcome to Connect! I work with the doctors and nurses in the transplant center at Mayo. For living donors, the beginning first few steps of the process can be done remotely. The potential donors can fill out our online form and if they chosen as a donor, they can have their bloodwork done locally to be sure they are a match and healthy enough to continue the process. Once those results are reviewed by Mayo, the donors can also do any routine preventative care locally that they might be missing such as colonoscopy, mammogram, skin checks, etc. These are things they may already have done if they are keeping up with their preventative care. Once they have their bloodwork approved by the team and are being considered a potential donor, that's when they will need to travel to the transplant center for consultations and testing. The transplant team needs to meet the donor in person to assess their health and willingness to donate. So in short summary, some tests can be done at home but generally the consultations need to be done at Mayo. I hope that's helpful information for you. The team will go over all those and other details once you are approved for transplant.